The unexpected

After some Xanax and a lot of crying I am able to fill you all in on the turn that Brody's progress has taken. We were absolutely fall off our seats shocked to learn that Brodys airway is too small to be able to breathe without his Trach. He has subglottic and laryngotracheal stenosis that have most likely been there since traumatic intubations back in the NICU. This most likely has been present for a long time and no one else caught it. This changes the outlook dramatically. Brody will not be getting his Trach out in the spring. There are a lot of things that need to take place prior to the reconstruction. We need to confirm that there is no reflux...which was one of the goals today but Brody freaked out so much that he pulled the probe from his nose and that has been a whole other mess. Next he needs to be cleared by Pulmonology as his lungs will need to be in their best possible shape to support what he is about to go through. Often they wait until kids are between 2-3 but that will all depend on his lung function. Then we embark on a reconstructive process that involves stenting the airway and taking cartilidge from between his ribs to reconstruct it. One or two major major major surgeries requiring 2-4 week ICU stays. Brody won't be able to vocalize at all until then and likely not able to advance his feedings any more. He will have to start to learn sign language to express himself and after work very intensively with speech therapy. When all is said and done the success rate is 90% but to me... I fear the other 10% of kids who are never able to have their trachs removed.

We are terrified. I really was beginning to see the light at the end of the tunnel. I thought that we would get some relief soon and that we could do "normal" activities with our kids and maybe even finally get my dream of the beach with the boys. I don't know when, now if, I will ever feel like me again and my kids will ever be able to socialize and enjoy the simple things they have been unable to participate in. I am paralyzed with fear once again.


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